PPIE (Patient and Public Involvement and Engagement) Work
Patient and Public Involvement and Engagement in Research
SGC UK stands willing and able to provide, partner and support PPI/E activities with any interested parties. We are fully committed to ensuring that we provide a professional, appropriate and transparent service to all our partners. We have provided some guidance, considerations and information below to help you think through your PPI/E needs.
Please don’t hesitate to reach out to us at [email protected] with any questions or, if you would like to start a conversation around a partnership.
What sort of PPI/E is needed?
Research and trials are meaningless if not undertaken in a group who are representative of the population you wish to serve. PPI should be included at all stages of research in cancer, from the development of a research idea, through to the delivery of that research, to assessment of the outputs and next steps.
Involvement and Engagement are different, it is important to get the right people for the task e.g. the skills and people needed for a Trial Management Group (TMG) are very different to a focus group discussion.
- Cost in your PPI activities appropriately in budgets so you can get the input needed
- Make it easy! Provide clear accessible opportunities for involvement for a range of people across all research. Consider their costs, time, travel etc
- Support and learning to ensure public involvement is undertaken with confidence and competence by everyone – it’s needed both ways
PPIE can be in several forms and it is essential that in all scenarios a clear description of the task, time and remuneration is agreed before any work commences
How to start planning your PPI/E input
Initial scoping conversations should include:
- What exactly you need input/assistance with?
- Who to include/how many patients?
- How much time will be needed?
- Who would do ‘the work’ i.e. summarise discussions, edit documents, provide written feedback?
- Practicalities – via zoom, in person? Who will chair, agenda?
- Remuneration for the work done by the Charity
Contracting?
- What (if any) contracts are needed
- Will expert input be needed incurring extra costs for the Charity? e.g. legal review of a contract
- Discuss and be clear on amendment options
- Remuneration should be included
What will it cost?
Costs vary depending on the inputs required and there is guidance available for different types of projects.
The National Institute of Health Research (NIHR) have produced UK standards for Public Involvement and Payment Guidance for researchers, professionals and members of the public:
UK Standards for Public Involvement
https://www.nihr.ac.uk/payment-guidance-researchers-and-professionals
Payment guidance for members of the public considering involvement in research | NIHR
For partnership work between Charities and Industry, Fair Market Value (FMV) guidance is available to provide consistency to reimbursement for this cross-sector partnership work. It can be accessed here:
Guide to Fair Market Value for Charities in Partnership Work | Patient Information Forum
Presentations and Training
We, at SGC UK, regularly present on PPI/E, how to do it, how to train teams to do it and showcasing projects we have been part of. Don't hesitate to get in touch if we can help in any way.
Presentations in 2025 include our partnership work with Roche to co-produce genomics leaflets for patients at the ABPI Code Event, an overview of PPI/E engagement between trials units and Charities to the UCLH Clinical Trials Unit and, a keynote address at the recent IAOO2025 conference. You can read more on our LinkedIn page.